The way Ontario cares for developmentally delayed adults and their families is “deeply flawed”, says Ontario’s ombudsman, whose four-year investigation revealed “shocking systemic problems” in the province’s treatment of the disabled.

Blair CrawfordOttawa Citizen
August 24, 2016

The way Ontario cares for developmentally delayed adults and their families is “deeply flawed”, says Ontario’s ombudsman, whose four-year investigation revealed “shocking systemic problems” in the province’s treatment of the disabled.

Ombudsman Paul Dubé released his 140-page report, Nowhere To Turn, on Wednesday at Queen’s Park. The report makes 60 recommendations, all of which have been accepted by the Ministry of Community and Social Services, Dubé said.

“When we first began this investigation, we encountered the same roadblocks many of these families had faced for years: A fragmented, overly complicated system of service agencies and funding programs, and a baffling lack of flexibility from officials at the top,” Dubé told reporters.

The investigation was launched in 2012 by former ombudsman André Marin, but over the course of the probe he inherited, Dubé said he noticed significant improvements in the system.

“At times, our own staff had a taste of the futility that so many families experienced — finding help seemed impossible. But persistence paid off and, one case at a time, working with Ministry officials and agencies, we found it was possible,” he said. “Suitable homes were found. Funding flowed. Placements were created. And ultimately, after several months of working collaboratively, we saw a culture change at the Ministry.”

Of 18 cases highlighted in the report, half are from Ottawa or Eastern Ontario, including high-profiles cases such as Amanda Telford, who in 2013 dropped off her then 19-year-old son, Philippe, at the provincial social services office saying she could no longer look after him. Another case was that of Cindy Gibson who was desperately searching for a home for her disabled adult son as she was herself dying of cancer.

Dubé thanked those who came forward for sharing “their frustrations and heart-wrenching experiences.”

“Their dedication and devotion to their loved ones has finally given way to constructive changes that will ensure thousands of other Ontarians will not have to endure a similar ordeal,” he said.

Telford, who was in Toronto for the press conference, said she was pleased with the report and the ministry’s response.

“I see a lot of recommendations that would have helped our situation and the response would have been better,” Telford said.

But others criticized the report for focusing too much on crisis cases rather than on helping families before their situations deteriorated.

“I think it falls short,” said Brian Tardif, executive director of Citizen Advocacy. “There are 62,000 people in Ontario with intellectual disabilities and this report really only addresses a fraction of those. It’s focused on people in crisis, in urgent need, in long-term care, who are homeless, or in alternate care beds in hospital. I don’t want to diminish the needs of that group, but that’s only a small percentage of those 62,000.

“The reason people are in crisis is that when they turn 18 or leave the school system, there is nothing for them. Families are left with having to do it all. And they fall apart. That’s what causes crisis.”

Some of the cases outlined in the ombudsman’s report are heartbreaking. These cases — Dubé called them “extreme and egregious” — include an Ottawa woman who was removed from her home after being abused by her mother and was shunted among 20 different residences in 34 days, a 36-year-old man from Eastern Ontario with an intellectual age of 18 months who lived for 12 years in a psychiatric hospital while he waited for a spot in a group home, and a Toronto man who spent 73 days in a $2,000-a-day hospital bed because of miscommunication among government agencies.

Dubé found inconsistent policies across the province and a confusing mishmash of agencies and government services.

“Families were often bewildered by the confusing web of service providers or oblivious to the distinctions between the various service agencies, Developmental Services Ontario offices and Ministry officials,” the report says. “Many were discouraged by interminable wait list delays and desperate for help. Some were on the brink of crisis, others firmly in its midst.”

Of his 60 recommendations, Dubé said the most important was the first, which calls on the Ministry of Community and Social Services to monitor and audit agencies to ensure they’re doing their job.

“I think the first is the most important — that the ministry acknowledge its role in taking the lead in this field and not just being hands off and directing money to development services agencies. But taking the lead, establishing definitions, developing programs and making sure that there is movement on this file.”

Other recommendations include making more emergency beds available in cases of abuse or neglect, that police establish special units to address cases of abuse of adults with developmental disabilities, that there be specialized services for those with developmental delays who are in court or in jail; that the ministry proved resources in cases with a high risk of abandonment or homelessness, and that there be a better system to match the disabled with appropriate group home vacancies.

The full report is available on the Ombudsman’s website ombudsman.on.ca.

Telford, who along with other families met with Community and Social Services Minister Helena Jaczek on Wednesday, said she was pleased with the ministry’s response, which two years ago boosted funding for adults with developmental disabilities by $810 million..

“There was definitely a shift in attitude from government. She did seem to be very emotional and quite compassionate. She really did seem to want to make things right and that in itself has been a huge change. Acknowledging that things have not worked and need to be improved. That cultural shift has been huge,” Telford said.

Tardif of Citizen Advocacy, however, said that more needs to be done.

“It talks about fixing a system. It doesn’t talk about transforming it.

“You have to do more than research and track and analyze. You can track all you want the numbers you want, but if you’re not addressing why they’re there in the first place, what are you doing?”

Eastern Ontario's 'extreme and egregious' cases

Half of the 18 “extreme and egregious” cases of mistreatment of intellectually disabled adults cited by Ontario Ombudsman Paul Dubé are from Ottawa and Eastern Ontario. Some of the highest profile cases, such as Amanda Telford and her son Philippe, Cindy Gibson, the dying mother of a disabled son, and Jamie Hawley, who died of neglect while living with his brother after social services lost track of him, received intense media attention.

Others, such as 24-year-old “Patrick”, who was placed in a long term care home where he was sexually molested by his 75-year-old roommate, were among the 1,436 complaints that went directly to the Ombudsman. The names are aliases used in the report, with the exception of Hawley, Gibson and Telford (who spoke to Postmedia and acknowledged the man identified as “Serge” by the Ombudsman was her son, Philippe).

Philippe Telford

Philippe was 19 when his mother, Amanda, took him to the Developmental Services Ontario office in Ottawa and left him there, saying she was unable to care for him anymore. Philippe is diabetic, non-verbal and has autism and profound developmental delay. The six-foot, 215-pound man functions at the level of a two-year-old.

“Truth be known, when I was on my way down there I really wasn’t sure if I was going to do it,” Telford told the Ombudsman. “Even when I was in the DSO office, I really wasn’t sure if I was going to do it … I just left him. I had eye contact with somebody at reception … and I didn’t say anything to her. I just told him I loved him, gave him a high five and told him that he was going to go to camp, because going to respite or group homes for him, he understands it’s like going to summer camp. And he was fine. He was happy.”

Amanda Telford told Postmedia on Wednesday that the ministry’s crisis response has improved since her desperate days with Philippe, who is now living in group home. “It could have been helpful for Philippe as well, but it wasn’t in place and perhaps it was put in place because of me and what other families were expressing very publicly.”

‘Adam’

Now 23, Adam has severe autism and an intellectual age below five years. School officials became so alarmed at his physical state and poor hygiene that they reported the case to Ottawa police. “Upon entering the premises officers found appalling living conditions with a stench so strong it was difficult to breathe. Rotting garbage was all over the house with fecal and other unidentified litter spread over the walls and floors.” Adam was removed from the home and placed in care and his parents charged with neglect. But when those charges were later dropped, the police officers were alarmed to find the social agency planned to return Adam to his parents’ care.

Shocked, the officers told the Ombudsman, “We went straight to the Ministry, and said, ‘What is going on? How can you say that this young man, with all of the needs that he’s gonna have ahead of him, has got nowhere? There’s nothing. There’s no money. There’s nothing … ‘”

Eventually, a permanent placement was found for Adam and as of June 2015 was reported to be doing well.

‘Layla’

Layla of Ottawa suffers from autism, intellectual disability and behavioural and psychiatric problems. In 2012, when she was 18, her behaviour had deteriorated and she was removed from the care of her mother, who suffered her own mental health issues and had begun to abuse Layla. Over the next 34 days, Layla was in more than 20 placements, including homeless shelters were she was exceedingly vulnerable. Her case manager told investigators: “(She) didn’t … understand the culture of the shelter. Didn’t understand the amount of violence, the drugs, the prostitution, all of that. It was not safe for her to be around that. Not that the shelters didn’t want to serve her, but for her own health and safety, it was not right.”

Despite being listed at the highest level of priority, Layla waited two years for placement in a safe bed.

‘Patrick’

Patrick, 24, who lives in rural Eastern Ontario, suffers cerebral palsy and communicates with sign language. He was living at home, with respite care and supports provided, but became increasingly frustrated and violent as he grew older. In 2012, his mother became incapable of managing him and placed him on a waiting list for residential care. After months of waiting, Patrick was placed in the only bed available at a long-term care home with residents decades older than him. At one point, he lashed out and accidentally broke the ankle of an elderly woman. Patrick shared a room with a 75-year-old man who had suffered a stroke. The man, who had been warned about inappropriate sexual behaviour, was later found to have been groping Patrick’s groin as he slept. In 2015, Patrick was finally moved to a group home where he is reportedly doing well.

Jamie Hawley

One of two coroners’ inquests studied by the Ombudsman’s office was that of Jamie Hawley, 41, who died May 26, 2008, of pneumonia, starvation and complications from infected bedsores. Hawley was non-verbal and had a mental age of seven in addition to physical disabilities that required him to use a wheelchair. Hawley was in provincial care in 2000 when his brother, Jerry, removed him and brought to his home near Brockville. Eventually, the local Developmental Services Sector lost track of him. When he died, Jamie Hawley weighed just 57 lbs. Jerry Hawley was convicted of manslaughter and sentenced to 20 years in prison. The coroner’s inquest made 17 recommendations, including improving the way people are tracked after being discharged from care.